Harrowing stories emerge about treatment of people with dementia

In response to the distressing stories, a GP and expert is calling for a greater focus on determining whether patients’ pain is the cause of challenging behaviour, and for better environments and activities tailored to people with dementia.
 
The Royal Commission into Aged Care Quality and Safety this week heard that one resident with dementia had killed another in a NSW aged care facility.
 
The commission touched on the vexed issue of physical and pharmacological restraints, hearing that Terry Reeves, a 72-year-old man with dementia, had been physically restrained to a chair at least 30 times within two months, on one occasion from 3.00 am.
 
The daughter of a woman with dementia told the hearing of visiting her mother every morning to feed her breakfast only to find her hands covered in faeces after being agitated from being left in a dirty adult nappy. 
 
The commission also heard the story of an 85-year-old woman from Sydney whose dentures had apparently been left in her mouth for weeks, resulting in what her dentist described as significant decay requiring three teeth to be removed.
 
Counsel assisting the commission Paul Gray opened this week’s hearing by describing people with dementia as ‘some of Australia’s most vulnerable people’, citing issues around pain management, mobility, injury risk and incontinence, as well as a lack of social connection and poor quality of life.
 
The hearings raised the issue of physical restraints for people with dementia, over-prescription and over-administration of psychotropic medicines and chemical restraints.
 
Mr Gray stated that whether physical or pharmacological restrictive practices are ever justified is a contentious issue.
 
In July, new restrictions on the use of restraints in aged care will come into effect, with the law changed ahead of the commission’s opening in January.
 
Dr Kenneth Wong, who assessed Mr Reeves when he arrived at the aged care facility, told the commission that physical restraints should only be used when there was no alternative.
 
The commission also heard about the challenges for those living alongside people with advanced dementia.
 
Darryl Melchhart, a 90-year-old resident of an aged care facility in Melbourne, said some of her fellow residents with dementia could be violent. She said staff had at times ignored her requests for medication, disregarded her wishes most of the time, and had once taken her angina medication away despite her protests.
 
Another resident, Merle Mitchell – who once headed the Australian Council of Social Services in the 1980s – told the commission there are not enough activities or stimulating things for residents to do.
 
‘I watch many of them actually lose their cognitive ability when they come in,’ Ms Mitchell told the commission.
 
‘People come in and they are told, “This is your home now”. Well, it’s not. It’s an institution and it’s where you live.’
 
The stories emerging from this week’s hearings have not surprised University of Newcastle Professor and GP, Professor Dimity Pond, who has a special interest in aged care and dementia.
 
Ahead of her appearance at the commission next week, Professor Pond told newsGP that treating people with dementia in aged care facilities could be challenging.
 
‘Pain is poorly recognised in dementia, because people can’t tell us. Sometimes they become agitated, so it’s really a question of identifying they’re in pain,’ she said.
 
Professor Pond once treated a man with advanced dementia who would become agitated to the point of striking nursing staff. Reading through his notes, Professor Pond found the patient had severe osteoarthritis of the hip. After talking with the nursing staff, she suggested giving the man two paracetamol tablets before getting him out of bed.
 
‘It worked like magic. It wasn’t aggression – it was pain,’ she said.
 
Professor Pond said many of the issues with patients with dementia are linked to their environment.
 
‘As a society, we need to stop thinking about dementia as the most awful thing that could happen to you short of death, and instead think about ways of improving the quality of life,’ she said.
 
‘I visited a respite facility in Tasmania where all the residents had dementia. But it was a happy place.
 
‘A group of women were sorting material with different textures and shapes and folding them. For them, it was a meaningful activity – it didn’t matter it wasn’t for a purpose. A group of men were building a tower out of bricks. They’d knock it down because of shaking hands, laugh, and start again.
 
‘So it’s not rocket science, but it is a different way of looking at the world. There are often simple solutions, but it does take some training.’
 
Professor Pond said the high rates of depression amongst people with dementia are at times linked to the environment.
 
‘People [with dementia] need distraction and enjoyable activities, like everybody. That needs to be factored into the environment,’ she said.
 
‘It’s not a prison, not a hospital.’

aged care dementia older people restraints royal commission